Our NY Jets Adventure, Thank You Marc Pintel!!!!!

Marc Pintel was a Hasselberger for a day!!!

This September we had a special event happen to our family.  Marc Pintel, along with the Pintel Family Cancer Support Services provided tickets to the Jets Game on September 28, 2014 at Metlife Stadium.  They purchased tickets for all five of us, and Marc worked extremely hard to make sure that the seats were all together in the wheelchair accessible area with access to the Lexus Clubhouse.  It was very generous of them to provide access to this event for our entire family.  Daniel Hasselberger is a 16 year old severely disabled and medically fragile young man.  He was born with a devastating brain deformity called Polymicrogyria.  Daniel's strongest ability is his acute vision and awareness of sights and sounds around him.  He suffers from seizures, respiratory problems, stomach problems, can not speak, walk, and is fed by g tube only.  He does however, have the most beautiful smile.  So seeing that smile is like seeing the biggest and brightest star.  His prognosis is unknown.

MARC PINTEL AND DANIEL HASSELBERGER

Marc Pintel also had a special sweatsuit made by Ursula, from Party planners.  She didn't charge him for it, which was very kind of her.  The sweat suit he wore had "Daniel's Number 1 fan" on the front and on the leg of the pants.  On the back of his sweatshirt read "the Hasselberger Fund Rules".  Marc took great pride wearing the sweat shirt and sweat pants at the game.  It was very kind of Ursula to do this for Marc so he could represent Daniel and what he had done for our family.  He was a "Hasselberger for the Day" on Sunday September 28th, even giving up an entire day he could have been spending with his son Spencer to spend it with the Hasselberger Family.

Additionally, prior to the game, Marc contact the NY Jets and asked them to send something special to Daniel.  They sent him an autographed football, signed by #27 Dee Miliner.  The Jets don't send out personalized footballs to everyone, so this was very special.  We are going to put up a display case for this football and the many other nice things Daniel received at the game.

So we owe a very special thanks to Marc Pintel and the Pintel family, the New York Jets organization, Ursula from Party planners who made Marc's outfit, and everyone at Metlife Stadium as well who really went out of their way to help us.

Marc Pintel was extremely kind to provide this great experience to our entire family.  We can't thank him enough, the Hasselberger Family enjoyed a beautiful day at the stadium, and the access to the Lexus Clubhouse made it very easy to care for Daniel.   It was a wonderful day.   Marc is a wonderful guy who wants to make the world a better place and wants to be inspiration to others.

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The Day of the Jets Game, September 28, 2014, by Julie, Daniel's Mom......

I had spent the prior evening preparing and planning what we would need for Daniel.  Daniel is 100% G Tube fed, and has medication needs through out the day.  He needs regular medication, and medication for nausea, anxiety, and seizures.  I woke up at 5:30AM, and took a very quick shower, got Daniel's diaper changed, got him dressed (WE DIDN'T HAVE ANY GREEN CLOTHES OR JETS CLOTHES).  Prepared his feeding pump and packed up two enormous bags of supplies for the day.  John figured out our driving directions and filled a cooler with drinks.

John, Thomas, Daniel and I left our house in Sandy Hook, CT at 7:00AM.  We drove on this beautiful sunny Fall day out to Staten Island, NY to Wagner College to pick up Sarah, who we had not seen since August.  I wanted to cry when I saw her come out of the lobby and walk across the bridge.  Sarah is 18, almost 19, and studying Arts Administration.  We are so proud of her.

Once we had picked up Sarah, we were all together as a family, and my heart felt so happy.  I separated my brain from all of the worries that were eating away at me, and chose to have a special time with my children.   Readers, you have to understand, life with a severely medically fragile child pretty much prevents us from doing things together.  It is very RARE that the 5 of us get to go and do something FUN, together.  Very RARE indeed.   While John works very hard to provide for the family, I work very hard managing a complicated child and a complicated mess of financial pressure.  I try to work when I can, but its never enough.  Caring for a disabled child puts pressures on a family that far exceed the number of words I can paint on this canvas.  So lets focus back on the sunny day of our NY Jets adventure....

We arrived at MetLife Stadium, and immediately the excellent customer service started.  The parking lot guy made sure we went right to the best Handicap spot available.  We have an over sized Ford E250 Conversion van and it is difficult to park sometimes.  I need to have the van close in case Daniel has seizure, illness, etc and we need to get him out.  I laid Daniel out in the van, and changed his diaper, and made sure he was all set to go in.   John said we looked like dogs in a sea of cats.  We did not have any green on!!!  Being from Sandy Hook, you think we would have.    But we definitely didn't have any Jets clothing.  I wish we did, everyone looked like they were having so much fun.  People actually tailgate, cook meals, have fun, in the parking lot.  That really happens!!! I've only seen it on TV.

When we proceeded to enter the stadium area, a very nice man in a suit, I wish I got his name, came up and led us personally through the gate and help get our things properly checked.  Everyone was so friendly, and so helpful.  The sun was very bright and it was 80 degrees with a simply perfect clear blue sky.  What a blessing to be having fun on such a gorgeous day.    John and Thomas played the "toss the football" game outside of the stadium and of course John my "Mr. Athletic" got the Ball through the hoop and won a prize.  Thomas and John got to take a selfie, but I'm not sure where that picture went.

About that time I received a text message from my friend, Marc Pintel, who had made ALL of this possible for us, that he was arriving at the stadium.  We went in and upstairs to the Lexus Clubhouse area.  That place was awesome!!  To be able to sit inside and see the stadium outside, so cool.  They had TV screens everywhere.  Honestly, we felt very humbled to be there, it was way more luxurious than I thought it would be.   We found where our seats were and we all just stood there mesmerized by the stadium.  We had never experienced a stadium before like that.   I took Daniel and the kids and went to look for Marc, I found him eating his lunch wearing his "Daniel's #1 Fan" outfit. He looked great!!  I couldn't quite put my finger on it, but something about him looked different.  Later I found out he had lost 37 pounds and looked terrific.  I was too mesmerized by the sweat suit Ursula from Party Planners had made for him to wear.  So sweet.

The kids got to play some games and win prizes in the Lexus clubhouse. Daniel even got his picture taken with a couple of pretty cheerleaders. They got pins, headbands, gifts from spinning the wheel, etc. That was fun.

The game started at 1 and we were all very excited.  Actress and singer Jesse James Decker sang the national anthem, and it gave me chills.   The Jets were playing the Detroit Lions.  Thomas and Sarah were watching the game intently, as was John.  Daniel was looking all around, way up high mostly.  But he wasn't his normal giddy happy self.  He had a stomach ache, and twice that day I had to bring him to the family restroom where I could lock the door, put him on the floor and clean and change him.  That was very difficult, and probably the only time during the day that I actually cried.    Some things are just never easy no matter where I go.  Changing a terrible poop diaper on a 16 year old is one of the difficulties that most people don't realize special needs moms go through.  Sigh.  It was rough, and I made the entire area smell so bad that a cleaning person came right in after us each time we went in.  Made me feel like a jerk, but what else am I supposed to do?  Oh well.

The seats we had were in the shade, so we had no worries about sun.  We had $6.00 cokes and $5.00 waters, and after buying lunch I had no money left to buy the kids a souvenir t shirt... but they understood completely.  Three cheeseburgers and fries, $75.00.  John had wanted to put together a tailgate picnic, I should have listened to him!!!  But it was something we would never get to do again.

The Jets lost the game, sadly, 17 to 24.  But it was a great experience.   Why was it great for Daniel? Not because he is able to understand the game, but because the sensory feeling of the roar of the crowd, the music, the lights, and even some fireworks when a touch down was scored really entranced him.    I never quite know how Daniel is going to react to things, but he seemed very happy.

This Hasselberger family has been through hell and back repeatedly for 16 years.  We have daily challenges that push me to the brink of sanity.  I don't sleep nights, and Daniel's medical care is astronomical.  John and I love each other very much, but the stress can eat away at even the best of relationships.  We are coming up on our 22nd wedding anniversary October 3rd!!    But where I am going here is, we seldom do anything as luxurious as a Football game at MetLife Stadium.   The kids were so excited, as if we were going to a theme park!   Just being together, makes us happy.  Having Daniel in our life has taught us that family is so important.   When we get together, and there isn't financial stress, or medical stress, or anxiety stress, or stress stress....  we get a chance to let our guards down a little bit, and laugh.   That is the true gift.

So we had a beautiful gift of watching a football game at Metlife Stadium.  It was  a day where everyone was in good health, and a trip that seemed overwhelming, really wasn't.

Marc Pintel left the game a little bit early, so we took some group pictures and said our goodbyes. We left the Stadium about 4:00pm.  Sarah was returned safely to her campus by 5:00pm and we hugged and kissed good bye.  Then we drove back home from New York City to Sandy Hook,CT, picked up Henry the dog from Grandma and Poppa and went back to our life.

Our NY Jets adventure was a success.   It is all because of Marc Pintel, and his wish to give the family a day of FUN.

Thank you to Marc Pintel, the Pintel family, the NY Jets, Ursula of Party Planners, and everyone who made this day a reality for us.  There is no measure to the amount of gratitude we have for just a little relief and fun for a day.

Much love,

The Hasselberger Family:  John, Julie, Sarah, Daniel, and Thomas

Coffee in my favorite Florida chair

In a white soft leather recliner, that swivels 360 degrees, I'm sitting with my feet up looking out a window at Florida.   Daniel is sleeping in a crazy but happy position in the bed I just got up from. When we travel one of the biggest challenges is where do you put a 16 year old disabled child to sleep.  Gone are the the days of bed rails and  pack and plays.  Usually he sleeps right up next to me.  Because he wants to cuddle up and be close.  Daddy is on a trundle bed at the other side of the room. It's like a camp.  The other kids get to have their own rooms and that's ok.  They are getting older now and need their privacy.

 It never ceases to put a numbing surreal feeling in my brain when I try to envision my future.  It includes the three of us, in this camp, or some other camp, so that I can take care of Daniel.  A far cry from the happy retirees I see down here in Florida enjoying their grandchildren, or just strolling hand in hand down the beach.   Our nest will always include the one baby bird who has no wings.

Florida has become, to me, a place of obsession.  I love the weather, the air, the water, the people.  Handicap spots are plentiful, and people are patient.  Beaches now offer beach wheelchairs, so Daniel can go take a walk down the beach, or just get right up to the warm water of the Gulf of Mexico.  The roads are lined with palm trees and the homes are very solid structures full of ceiling fans, tile, and Florida flare.  Sarah and I walked down to the beach with Daniel last night, I'd say it was about two blocks from this condo we are in.  He smiled and looked with fascination at everything he saw.  It is a far cry from Sandy Hook, CT where we can not walk safely on our own road.  

Coffee tastes better for some reason when I am rocking in this chair looking at some species of palm tree that has grown about 5 feet taller in the 6 or 7 years we have been bring Daniel here to John's cousin's condo.

I don't fear for his health and well being in this place, after all, its Naples Florida. There is a hospital near by, and a doctors office on every corner of some sort.

Sarah and I have been engrossed in episodes of HGTV all week and all I can say is that there isnt a show on that channel that I don't love.  I would just like to see an episode where they have to accommodate for a disabled child.

As my moment of peace is drawing to a close, I will add a few pictures to this post and simply end until later. Daniel has started making his "hey I'm awake in here" sounds, and he needs much care in the morning.  This white leather chair is my very favorite item in this entire condo.  Even if my moments in this place of peace are few, I will say that I thoroughly enjoy them.  Coffee just tastes better in this chair.

The "Julie" episodes

I've been a special needs Mom for 16 years and 6 months.  Life has bound and tied me to a world of emotional intensity that I never really imagined, planned for, or even knew existed.  My son is a darling boy, he fills every single day with love and sweetness, his gentle eyes and joyful smile just let you know that he is OK.

But here's the "thing".  I am only human.  I also have two other "normal" children, Sarah and Thomas.  Both of my children have had wonderful academic records, been involved in everything from brownies, to dance, to theater, to orchestra, to jazz band, to baseball, football, soccer, basketball....    And as they age and grow I proud just like other parents.   The thing is, I have this incredible appreciation for the fact that kids have the ability to speak, walk, sing, dance, laugh, and just be wonderfully independent.  My biggest problem emotionally is the "thing" or whatever name it can be called when suddenly I feel this overwhelming sense of absolute sadness.  It happens quite randomly.  I can't control it.  It is as if it is a release of suppressed feelings in the midst of "trying to be like every other parent".  But I'm not.

On June 10, a Tuesday evening, my husband and I attended the Newtown High school Marching Band meeting for parents and students.  Thomas is ONLY going into 8th grade but he is allowed to participate.  He is so excited, of course, being the blossoming talented musician that he is.  And as I sat there, listening and watching the kids, so full of excitement just from being together, it brought back memories of my own Marching Band experiences when I was a kid.  John and I were thumbing through the parent manual, feeling completely overwhelmed, but wanting to support Thomas.  

And then, it happened.  The "thing".  Tears welled up in my eyes and my heart started to pound.  I can't stop the tears, so I have to let them pour.  I try to hide and slouch down, but my husband keeps whispering "whats wrong?  are you OK?"   I wave him away and say "just give me a second".  Because I am thinking of Daniel.  Daniel who will never march in a band, sing a song, play a cello, or write a story.  Being inside the high school auditorium infused me with the sounds and sights that reminded me of the 4 years we spent watching our daughter perform and develop as a beautiful young lady.  Graduate, and go off to college where she is now thriving.   Daniel WOULD have been a senior next year.  He WOULD have been planning his future, applying to colleges, taking his SAT's and learning how to drive.

I am of the opinion that it is OK for us to have these moments of sadness because they are as real as breathing.  There is a certain amount of permanent loss that perpetuates as time and its events just passes Daniel by.

By the end of the band meeting, I had shifted my brain right back to Thomas where it belonged and met some other parents.  These parents don't know about Daniel, most of them, so its nice to just be one of the crowd.  When I start showing up pushing the wheelchair, people treat me differently and the kids stare.  It's not a bad "different", but any mother of a special needs child who is in a chair, on a feeding tube, and makes crazy weird noises can attest to feeling "different".

Sometimes I have had these episodes at dance recitals, watching plays, hearing concerts.  I believe that it is because I have a wish deep inside my inner soul to know what Daniel would have enjoyed doing, and what Daniel would have sounded like if I have never acquired this virus that caused his brain not to form.  He started out just like any other baby, until the CMV virus entered my body and his and changed the course of our lives forever.

Yesterday was June 12, 2014.  One of Daniel's classmates, who he has been with since he was three years old, "graduated" from the school system.  She is 21 and can no longer attend.  The school had a lovely ceremony and reception for her, her name is Emily.  It was a beautiful moment, profoundly happy and sad at the same time.  The slide show pulled up picture after picture of a group of kids in wheelchairs, Daniel included, and over time the group began to diminish.  9 months ago we lost our beloved classmate Ryan when he passed away unexpectedly.  Emily graduated, and now there is only Daniel and Lindsay.
I wasn't expecting to cry as much as I did, but the reality of what Daniel's limited life really is shows up in those slide shows.

I must conclude with something that will change the depressing nature of this post.  The love in that graduation ceremony yesterday was something that you could feel in the air.  There were tears in every single eye, and Emily's Mom is one of the most incredible special needs Mom's I have ever met.  It was a beautiful testimony to what these kids teach us, and show us.  It was a special ceremony to joyously celebrate the life of a child who has survived and thrived despite so many odds.  And her brave and dedicated family who have dealt with so many challenges.  

(THIS VIDEO IS A COLLAGE OF DANIEL THROUGH THE YEARS)

I have to have these episodes, its just in my nature.  It's just who I am.  And I never claim to be super woman who can endure this life with the strength of a giant.   I'm just Julie.  Failing and succeeding just like everyone else.  The difference with my life as opposed to other normal parents, is that I am "literally" keeping my son alive.  That is a role I have gladly accepted, even with all of the sacrifices that it brings.  I am entitled to a good cry.  It cleanses out those feelings.

May 30, 2013 SUMMER IS HERE!!!

May 30, 2013

It's a BEAUTIFUL day here in Sandy Hook, CT .  Seriously, the sun is shining and its supposed to be summer time warm today.  Hard to believe that June is around the corner.  May has been a whirlwind of concerts, plays, events, stressful things, sickness, broken washing machine, more concerts, Sarah getting her license, and more.   Daniel, in his quiet life, watches it all smiling from his wheelchair.

I am so very proud of my children.  Sarah has just excelled over the years and followed her heart.  Now she is getting ready to go off to college in August.  Unreal in so many ways.   Thomas is my little sweet big guy.  Taught himself how to play Trombone this month.  And can't wait for football.  I have to find something to do for the summer.

I still have not been able to get Daniel anywhere that he could swim, although I know how much he would love that!!

Fun with paint at school!!

Water time!!

He's been sick with an upper respiratory infection that created alot of congestion.   Off to the ER we went on Monday and the x ray did not show pneumonia!!!  Thank you GOD.  But he's pretty sick, even today not looking too well.   But his resilience never ceases to amaze me.  I honestly never know what to expect with this kid.

I am sitting here in my office writing.  My office that is also my bedroom because John exiles me in the middle of the night due to my snoring.  I have to remember to call the ENT to look at my sinuses.  I never have time for me.   Anyhow, just sitting here thinking about how many things kids are doing in the Spring, whether its sports, theatre, dance, or whatever.  Graduations every where.  Proms, and weddings and life changing events for families all around.

And then, there is my Daniel.  He is my buddy.  I adore spending time with him, and it is nice that he clearly likes his one on one time with Mom.  I just wish for once, there was some special event. Some special exciting new thing for Daniel.   So I have been praying that somehow we can figure out how to get a dog for Daniel.  I can't afford to buy a puppy these. days.   But a friend of mine is helping me reach out on Daniel's behalf to possibly acquire a dog for him.  That would be a big event!!

All I can say is, please be grateful for the gifts that your children have.  Don't be sad that they are growing up and becoming independent. It's what is natural and part of life's process.  Moving on and carrying forward to the next moments of life.  Time doesn't ever stop.  I have to remind myself to be grateful for the positive and wonderful family that I have.  Well, children anyhow.  But even with our dysfunction somehow they manage to be smart, resourceful, talented, and loving kids.

It's May 30th.  The sounds of birds and lawn mowers.  And in here, the sounds of nebulizer, vest treatments, oxygen machine humming and feeding pump whirring and beeping.  I don't like congestion.  Too many scary variables there.

Enough for now.  Praying for Daniel to get a dog somehow.  Praying for our family and that financially things will get better. Praying that I will finally pass my P and C exam. Praying that God will touch our hearts and heal the things that harden our hearts.  I am grateful.  Very grateful.

Peace out from Julie, Mom to Daniel, (bi-lateral diffuse Polymicrogyria secondary to CMV infection in utero. Non verbal, feeding tube fed, wheelchair, seizures, respiratory problems, othopedic problems, severe gastrointestinal reflux.)

Nutribullet for Easter, sick Mommy, and come on Spring hurry

Daniel Opens up his Easter Basket!!  March 31, 2014

April 3, 2013  Wednesday.  8:26am

Mommy is sick today.  Writing from the warmth of my many blankets and pillows I am suffering through a terrible chest cold today.  Fever, chills, fatigue, aches and cough.  Stress allows the bugs to find their way in and I find myself sick alot.

John just bought a "nutribullet" which is a way to make nutritious shakes.  Although green and pukish looking they actually really help you get all of your vitamins through natural foods.  Time will tell.

Wow its hard when I am down for the count because my services are needed here 100% of the time and taking time off is never an option.  So here, on a day when I could be working, studying, cleaning, etc I am snuggled in my bed.  Going to fall asleep at some point, and I know this for sure because the eyes in my head are repeatedly trying to close on me while my fingers type away.

Daniel.   Daniel had his eyes checked on Monday, and his eyes are great.  One eye does have a floater...meaning one eyeball goes in the opposite direction of the other.  But overall he got a clean bill of health on the eyes.

On Tuesday, we saw the Gastroenterologist from Connecticut Children's hospital.  We are going to be ordering a modified barrium swallow study for Daniel to be followed with a visit to the swallow team, and a new aggressive oral motor therapy program.  This is to first, help Daniel control secretions, and second see how well he is swallowing.   Eating again is not out of the question...and its something that we are revisiting NOW that his posture is so much straighter.

I think it would be cool for him to be able to taste food again.  The things people take for granted... like eating.

The sun is bright.  It is a Springtime sun.  And even if the air is cool, pretty soon it will be warmer and things will be blooming.  Blooming in some rebirth and renewal.  It was a dark and sad winter here in Sandy Hook.  But we have hope and promise.

HOPE and PROMISE for a brighter day.    I have this new bath and body works fragrance called "Beautiful Day" and when you use it, it is magic, it makes you have a beautiful day.

So the sick Mommy here is going to rest.  After some prayers.  Prayers that Daniels needs will be fulfilled, that we will be able to make ends meet and keep things afloat, prayers that enough financial help will come through that Sarah will be able to go off to college without stress.  Lots of prayers.  Lots of thoughts.

And once again... I am falling asleep here at the wheel.   Pain in my chest and back.  Being sick stinks.....

Happy April 2013.

Pools and the ADA

Earlier this year I began a search for a place on Cape Cod for us to bring our family.  Now, mind you, the location had to have wheelchair accessibility.
After about 25 calls to resorts and hotels, I found one place called the "Red Jacket Resort" in South Yarmouth that stated they were "wheelchair accessible" and had heated pools.   The manager did call me back and stated, with an uncomfortable tone in his voice that they DID NOT have pool lifts in order to get a child into the pool.  This is supposed to be a family friendly resort.

We decided to go anyways, because John can still carry Daniel into the pool and we figured it was only for a few days.   But Daniel is fast growing heavier, at age 14, and soon we will require pool lifts in order to get him into the water.

The pools may have been heated, but they felt cold....and Daniel shivered like crazy.  The resort had absolutely no wheelchair access to its beautiful beach..and all Daniel could do was watch from a distance.

We enjoyed ourselves, but found the Cape was not a friendly destination for children in wheelchairs.  I just came across an article which really tripped my anger at the fact that every place I called on the Cape DID NOT HAVE PROPER ACCESSIBILITY FOR DISABLED AND/OR WHEELCHAIR BOUND people.

From Parenting Magazine.....

It’s the kind of news that seriously ticks you off when you have a child with special needs, but it’s the kind of news that should perturb anyone with a heart.

By March 15, hotels and city recreation centers with public pools and spas were supposed to install or order permanent lifts, or get pool ramps, to make them accessible to kids and adults with special needs; the lifts alow them to transfer from wheelchairs into the water. This accessibility is in compliance with the Americans with Disabilities Act (ADA). The deadline got extended by two months as the hotel industry and Congressional reps resisted. And now, hotels and places with public pools have until January 31, 2013 to comply.This means we’re headed into one more summer that countless kids and adults around the country won’t be able to use their local pools. One more summer when parents will struggle to carry their child with disabilities into the pool because there is no other way, or give up and not go at all.

According to an article in the Los Angeles Times, pool manufacturers say the law applies to about 256,000 pools and spas around the country; only a small percentage, they estimate, are equipped with lifts. Even more mind-boggling is the resistance the accessibility legislation triggered. The American Hotel & Lodging Association urged members to push for a delay in enforcing the ADA at pools. Meanwhile, on March 14 South Carolina Republican Senators Jim DeMint and Lindsey Graham introduced a bill to inherently prevent the ADA from being enforced at public pools and spas. On March 16, Rep. David Schweikert (R-AZ) backed a similar bill.

What were they thinking? Well, as DeMint explained it, the enforcement of accessibility “could lead to increased litigation and heavy fines that could force pools to close or raise fees on families.” His proposal: “Pools with public access should have the flexibility to work directly with people with disabilities to accommodate their needs.”

I’d like to see Senator DeMint stand in front of a child with disabilities and tell him that, sorry, he can’t use his local pool because of concerns about lawsuits.

Of course, it’s important that hotels and rec centers get the right accessibility equipment and have a general plan in place before they comply. But how is it even possible there are any places left that haven’t gotten around to doing this, let alone major hotel chains? As for the hotel industry’s concernthat permanent lifts could pose a safety hazard to children tempted to play with them, the fact is, pools are generally dangerous places for kids. Which is why you are not supposed to leave them unattended.

Surely hotels could figure out a way to make sure kids don’t use permanent lifts as pool jungle gyms. Surely hotels should get a grip and realize that kids and adults with disabilities deserves fair access to its amenities. Swimming is not a luxury; every child and adult deserves the right to enjoy this summer pleasure."

Thankfully our town pool has a lift, its antiquated and manual...but at least they are trying.  Daniel loves to swim more than any other activity.  Resorts and Hotels should be ashamed of themselves if they have not yet complied to this law.

Thats just how I feel.

Football 2011

Watching the Game with Dad

This year my youngest, Thomas started playing football.  He is a big boy and we knew that it would be good for him.  He pushed himself diligently through all the conditioning.  He was and still is the last one running the laps.  But he never complains.  He is such a great kid.  But when I took Daniel to the first day of training, I didn't expect one of those "sad Moments" to hit me.  I thought I was past that.  Watching the boys...playing and running and catching...  Laughing and making friends.  I looked at Daniel in his wheelchair, quietly looking above the boys on the field at the trees and the clouds..   And tears began to stream down my face.  I felt alone.  I felt different.  I longed for a peak of what it would look like to see Daniel run and laugh.  I longed to hear what his voice would sound like.   And I left.  The next day, Thomas said to me...  Mom... don't go, you know everyone is going to stare at Daniel and you are going to feel sad again.   But I went.  Because it wasn't about me or Daniel...it was about Thomas.     And as the time went by, the families began introducing themselves to us...and Daniel began to be a very welcome spectator.  Some of the Mom's even pitched in and bought him his own "Nighthawks" training jersey.

Its a very hard thing....you see....  To be moving two normal children along a path of growth that is "normal" and progressive into their future.  And at the same time have a young man with you, who is also getting older, but who has no capacity to ever be independent.   Does it break your heart?  Hell yes.   But I tell myself every single day...shake it off...  they all need you.  Daniel is who...he...is.  He has a unique life and you can not "what if" yourself to death.

And I succumbed to hollering and cheering for the team with the rest of the families.  And Daniel continues to watch things in the sky.

Football...  Thomas?  Who knew?     Oh man...writing this post just made me cry.   Dear God please help me provide for this family.